neurofibromatosis cafe

A place to talk about NF, have fun and share.

“Dear Congressman, we need money for NF research!”

3273717777_fbd42738b0_bFriends and Colleagues –

As you may know I go to DC every year to ask Texas congressman to sign on to the below letter. Please help further these efforts by going onto http://www.congress.org/congressorg/officials/congress/?district=26&lvl=C&azip= 1) TYPE in your zip 2) get your congressman’s email (left side/ federal) 3) forward on the following letter (cut and paste).

It’s that simple – Again – this will help us get our 20 mill. for NF research. Each year we get closer and closer to a treatment for NF. Please help continue this process by taking 5 min. out or your time to write. Continue reading

March 16, 2009 Posted by | neurofibromatosis, Research, Texas NF Foundation | , , , , | 7 Comments

A NOTE FROM KEVIN NEALON.

3090342427_26cb9dd5b3_b3090342561_eb020396fa_bThis weekend I got the shock and surprise of my life! I was going through my emails looking for a phone number when I came across an unopened email dated November 14! It was from my new friend Kevin Nealon, from Saturday Night Live, who I had just met the night before.

I have no idea how I missed this very important email but I guess it was because I was traveling and wasn’t able to check email till I got back home. Anyway, here is the very nice email that Kevin wrote plus the photos he sent.

Hey Reggie,
So great meeting you last night, and your friends! I’m so
flattered that you guys came to my show. Oh, loved your website, too!!
Susan and I loved checking out each category. Great videos and pics,
great coverage on the news stations as well. We’re so impressed with
your courage and your raising awareness of NF. What a difference you
are making! Please keep us updated on the foundation.

Attached are a few pictures of me wearing your shirt. Btw, it
fits me like a glove. I have a new cause now. 🙂

Best wishes,
Kevin and Susan

Most of you have seen the photos from my trip to Manhattan Beach California, when I went to visit my friend, Scott. Well, on the visit, Scott suggested we go see Kevin Nealon at the Comedy club. That is where it all happened. After the show Kevin came over to meet me. It was there when I shared with Kevin and his Wife Susan about NF. What a nice couple they both are. So kind and understanding to NF, and the JUST ASK campaign. I’m proud that Kevin is wearing one of my JUST ASK! T-shirts. You never know where you may see one next. Thank you Kevin and Susan for your support. Hope to see you soon.

December 8, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Awareness, Benefit, Celebrity, Favorite Places, Friend, Friends, Friends of NF, Fun, Fundraising, Help, Just Ask!, News, nf, NF1, Photos, T-shirt, Texas NF Foundation | 33 Comments

TEXAS NEUROFIBROMATOSIS CAMP FOR ALL WEEKEND FUN!

Today is September 7th.  Just returned for Camp For All.  If you have never atten The Texas Neurofibromatosis Foundation’s, Camp For All. Trust me. You must attend next year.

I’m feeling really emotional.  Joy and sadness.  I met so many new friends as well reunited with friends from prevouis years.  Some of my friends don’t have NF but attended the camp to support me and have fun.

There are lots of Activities to enjoy.  What I enjoy mose of all.  When a parent or someone that met me on myspace, facebook or the local news, they come to talk to me and just want to talk.  It’s a feeling that I could never express in words.  It’s the greatest support one can ASK for.  For me and the person I have the pleasure of talking to.  It’s like getting a new family member.  And it hurts when it’s time to go home.

The joy is that you can look forward to the next year.   And it gets beter than that. You can keep in contact via email until the next camp. I want to say thank you to all of you for a greak weekend. If you see your photo and you want to add comment please do so. Add you name to it as well in the comment box.  We would like to know ideas you have for nexy year. what you will like to see to make it better. I will pass your ideas to The Texas NF Foundation.

PHOTOS

September 7, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Texas NF Foundation | , , , | 48 Comments

TEXAS NEUROFIBROMATOSIS FOUNDATION AND CAMP FOR ALL

I’m looking forward to another great time in Burton Texas.  Camp For All. The first day of camp is September 5-7th. Everyone who is going should have all there information submitted by now. I hope so.

Again this year The Texas Neurofibromatomatosis Foundation is having their annunial NF Family camp.  Again we are going to have a terrific time meeting our friends from last year, and I know we will make new friends this year as well. Horse back riding swimming games and more.  The best part is meeting new friends and sharing stories. It’s going to be a great one and I hope to see you there. Who knows you may see someone playing his music with his newly formed band. I’m not saying you will have to come and see.  Some you know might play the autoharp. Just maybe.

August 28, 2008 Posted by | Awareness, Friend, Friends, neurofibromatosis, NF1, Texas NF Foundation | 13 Comments

Houston NF Pizza Party, July 12!

Come meet all the friends you’ve met on Reggie’s blog and website. FREE PIZZA!!! FREE DRINKS!!! FREE GAMES!!! If you or a family member has NF or you just want to help spread awareness of NF, please rsvp today!

You don’t have to be an expert to hold a support group meeting. Just a desire to meet other’s with NF! Support group meetings can be as casual as getting together with other NF family members over a cup of coffee, to holding a meeting with a guest speaker. So get to know others in your area by requesting a “Support Group Starter Kit.” For more information contact Patient Outreach.

HOUSTON SUPPORT GROUPS
Saturday, July 12th, 2008: Houston Family Picnic view invite
11:00 a.m. – 1:00 p.m.
Zuma Fun Center
6767 Southwest Freeway
Houston, TX
Pizza, soft drinks and tokens provided.
**RSVP by July 7th by contacting Jennifer Kronvall
(limited number of seats available)

June 22, 2008 Posted by | Friends, Fun, neurofibromatosis, Texas NF Foundation | , , | 10 Comments

Charles, June and John Lowe raise over one million dollars for Texas NF Foundation!

Texas Neurofibromatosis Foundation Newsletter

Charles, June and John Lowe raise over one million dollars for the foundation!

Charles, June and John Lowe raise over one million dollars for the foundation! The Lowes have been with the foundation since the very beginning and have been raising funds through a weekly bingo session since 1988. Their devotion and contributions are more than appreciated, they are our inspiration and the backbone of this foundation.

Senator Harkin speaks out for NF! For the past several years, Senator John Harkin has sponsored an “NF Dear Colleague letter.” This letter was drafted to ask that all US Senators support NF research through the Department of Defense Appropriations Committee. These effort are the very reason scientific advancements have been made towards a cure for NF! Please join us by personally thanking Senator Harkin for his continued support.

CURRENT EVENTS

JULY Summer Family Picnics: Bring the family and meet others in the Houston, Dallas and San Antonio areas!.

June 26, 2008: Support Group Meeting, Dallas, TX
Sept. 5-7, 2008: NF Family Camp, Burton, TX
Sept. 23, 2008: Friends FORE Friends Golf Tournament, Richardson, TX
October 18, 2008: Spam OH! Rama, Irving, TX

2008 Symposium: Dallas, TX. More details to come. Continue reading

June 18, 2008 Posted by | Awareness, neurofibromatosis, News, Texas NF Foundation | , | 9 Comments

HATS OFF TO THE COMCAST REPS IN HOUSTON / JERRY’S BACK FROM IRAQ!

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2264707003_77c16ccfde_m.jpgOn Valentine’s Day, I went to Comcast. I had a problem with my cable box and I took it back to Comcast. A customer service worker waited on me. Denise was very nice and helped me with my problem. It was then that she told me how happy she was to see me. And that she had seen me on TV. All of the customer service people were just as nice as Denise. I had to go back today so I asked if I could take their photo to put on the blog as a way to say thank you for being so nice. It’s nice to know that a company as big as Comcast can have employees as nice and personable as Denise and her friends. Please, if are in you the area, show some love to the great job the ladies are doing at the Bellaire location. Thank you Denise. And of course Phelisia, Patricia, and Jennifer. What a Sweet Heart of a Day for me!

477733757_4d51c49b23_o.jpgWELCOME BACK, JERRY TURNER!
Hey Reggie,
I made it!!!!For everyone who has never experienced a 17 hour non-stop flight……Don’t do it!!! I thought it would be worth it not to stop in Europe on my way back, but it’s not. At some point in there you need a break. With about 4 hours to go in the flight I was in absolute misery. I’ll give you a buzz tommorrow.
Jerry T

 

February 16, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, Benefit, Friends, Friends of NF, Just Ask!, neurofibromatosis, NF1, NF2, Texas NF Foundation | , , , , , , | 250 Comments

Meet Reggie Bibbs – I have neurofibromatosis

My name is Reggie Bibbs. I am on a mission to spread the word about neurofibromatosis. I figure the more people who know about my disorder, the more they will understand me, so I made a video. Actually, I’ve made a few videos. They can be seen on my website, blog, YouTube, Veoh and Vimeo as well as photos at my Flickr, Facebook and MySpace account. If you have neurofibromatosis or if you’re wanting to help spread the word, please click on the links above, leave a comment, send an email, add the urls as links to your blogs and sites or send to your friends and fellow NF people. The more we can band together, the stronger our voice will be heard. I thank you for reading this far and I truly hope to hear from you soon!

Make it a TREMENDOUS Day! – Reggie Continue reading

February 7, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, neurofibromatosis, nf, NF1, Texas NF Foundation, Video | , , , , , , , | 242 Comments

New Facebook Group – “Friends of Neurofibromatosis”

picture-1.pngTo All:

I have created a group on Facebook called “Friends of Neurofibromatosis.”

To those of you unfamiliar with Facebook, it is a FREE website that allows you to do a lot of things like post photos, videos, and friend links, much like MySpace, but with one very important difference. It allows members to form groups of like-minded people who share special interests and allow them to easily interact with each other.

I can’t think of a more perfect tool to use in building a community of people who are challenged by neurofibromatosis in one way or another than this. Whether you have NF, have a friend or family member with NF, or are just interested in helping people with NF, this is the website for you.

By becoming a member of this group, you will be able to connect with other people who share the same frustrations, burdens and pain of NF. You can pass along information that you think might be helpful to others. We can send time-sensitive newsletters to ALL group members with a click of a button when an important event or news item occurs.

Facebook will never replace this blog but it will provide us the means to meet new people, build awareness, share information, and, most importantly, help us build a community that helps provide comfort, education, distractions and support to all affected by NF.

Please check out the group at this link and if you can see the endless possibilities that this site provides, please join!

I thank you! —Lou http://www.facebook.com/group.php?gid=21960217912

February 7, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Community, Facebook, Friends of NF, Help, neurofibromatosis, nf, Texas NF Foundation | , , , , , | 153 Comments

Texas NF Foundation to stage city-wide fundraiser at Houston’s finest restaurants

Texas NF Foundation to stage city-wide fundraiser at Houston’s best restaurants2008 Houston HighlightsLast night, Lou and I attended a special committee meeting to help plan and execute a fund-raiser to help those with NF in the Houston area. The fund-raiser will be held on Tuesday, April 22, 2008, at the Hotel Derek, in the Galleria area of Houston.

I am proud to be Honorary Chairman of this important event and I hope all of my friends can join me in this very worthy cause! Below is a letter from our Houston Highlights Chairman, Ishma Blackwell, detailing the event. It’s going to be a lot of fun!

DOWNLOAD INVITE  2438_001.pdf

Continue reading

February 2, 2008 Posted by | 2008 Houston Highlights, Awareness, Benefit, Friends of NF, M.D. Anderson, neurofibromatosis, News, nf, Organizations, Restaurant, Texas NF Foundation | , , , , , , , , | 154 Comments

Dr. Bart Moore say’s “JUST ASK!” with his new mug and state-of-the-art, homeopathic “JUST ASK!” forehead patch

bartaski.jpgGuess who visited my on line store recently?

Yep, my good friend and also doctor, Dr. Bart Moore of MD ANDERSON CANCER CENTER. He is proudly displaying the items that he purchased at the “Just Ask!” online store a short time ago. Not only is he a supporter of NF and “Race Across America for NF”, he’s also a very cool guy to have on your side.

Could you get your doctor to take a photo like this? I don’t think so! What a great sense of humor. Thanks for sharing your photo Dr. Moore! You’re the best!!!

Check out what people had to say about Bart at my Flickr account.

January 22, 2008 Posted by | Awareness, CTF.ORG, Friend, Friends of NF, Fundraising, Just Ask!, M.D. Anderson, Medical Resources, neurofibromatosis, Texas NF Foundation | , , , , , | 281 Comments

Ok, Reggie, whose butt did you have to kiss for this?!!

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Reggie,

Per our conversation on the phone, I would like to welcome you to the Honorary
Board of the Texas Neurofibromatosis Foundation. It is a privilege to have you on the board.
The foundation appreciates all you have done for Texas NF and NF awareness.

We look forward to working more with you in the Houston area.
Talk to you soon.

Cindy Hahn, M.Ed., Managing Director, Texas Neurofibromatosis Foundation Continue reading

January 17, 2008 Posted by | About Me, Awareness, Fundraising, neurofibromatosis, nf, NF in the News, Organizations, Research, Texas NF Foundation | , , , , , | 218 Comments

2008 Houston Livestock Show and Rodeo

06_95_imgp1439.jpgHouston, It’s almost time to Rodeo!

Cowboy Up, America! When a cowboy’s in a pinch, he just tightens up the cinch, spurs his horse and rides right through it, cause that’s the way the Duke would do it. He’d Cowboy Up.

This year it’s going to be another terrific year for the Houston Livestock Show and Rodeo. Just as I did last year, I will be there enjoying all activities for the 2008 show.

This year I plan to see more of the livestock show then I did last year. As for music, there are several performers I want to see this year. There are two I have in mind now, that I want to see Rascal Flatts and Tim McGraw I will see more then one, I hope. All that to look forward too, and I haven’t even started on the great food.

How many of you are planning to go the the Rodeo, and who will you see? It would be a great idea if any of you go, to take pictures and send me a photo and I will make a section for our photos for this year on the blog and Flickr.

January 12, 2008 Posted by | Friends, Friends with NF, Fun, Music, neurofibromatosis, NF1, Photos, RODEO, Texas NF Foundation | , , , , , | 250 Comments

Reggie Bibbs JUST ASK! ONLINE STORE NOW OPEN

cup8x10.jpgI’m proud to present to you the Reggie Bibbs online Just Ask! Store. We are now open. There are a wide range of new products available.

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We can increase awareness of Neurofibromatosis on a wider range, at the same time raise money for neurofibromatosis.

All proceeds will go toward research and awareness. I know you will find a product that will meet your fashion needs. My original shirts can be ordered from my site. The new link will take you to the store.

Happy Holidays and Happy Shopping!

December 22, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Adgiant, Appearances, Awareness, Friend, Friends of NF, Fun, Fundraising, Just Ask!, neurofibromatosis, News, NF1, NF2, Reggie's Search Machine, T-shirt, Texas NF Foundation | , , , , | 141 Comments

Reggie Bibbs Wikinews Interview

17115693_160x120.jpgReggie Bibbs was interviewed on Nov 23, 2007 for Wikinews describing what it is like living with neurofibromatosis and what he has done via his website, blog and other resources to increase awareness of NF.”

Click to watch Reggie Bibbs interview on Neurofibromatosis

November 29, 2007 Posted by | About Me, Awareness, Blogs, Celebrity, Friends with NF, M.D. Anderson, neurofibromatosis, Research, Texas NF Foundation, Video | , , , , | 24 Comments

Reggie Bibbs – Denise Terrill Golf Classic Benefitting NF

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Reggie was asked to say a few words and, from what I heard, did a tremendous job!

The Denise Terrill Charity Classics is an organization of volunteers whose purpose is to organize and operate the Denise Terrill Charity Tennis Classic and the Denise Terrill Charity Golf Classic. The goal of these charity tournaments is to raise money for research to find a treatment and cure for neurofibromatosis-2.

CLICK HERE TO WATCH NEWS STORY ON DENISE TERRILL

CLICK HERE FOR PHOTOS

October 25, 2007 Posted by | Awareness, Denise Terrill Golf Classic, Fundraising, neurofibromatosis, Research, Texas NF Foundation | , , , , , | 15 Comments

NF CAMP THIS WEEKEND

729368094_5026a66232.jpgHey guys and gals Just want to let you know where I will be this weekend. Burton Texas for the annual NF Camp. It’s been years since my last NF camp, and I’m happy to have this chance to go this year. I will get to see a lot of my friends from the other times I have gone. If you are not able to attend, don’t worry I plan to take lots of photos that you can see here and on my photo page. And all of you that can’t make it this year I hope you will plan to come next year. So lets talk camp today.

September 6, 2007 Posted by | A MESSAGE FROM REGGIE, Friends, Fun, NF1, NF2, Texas NF Foundation | , , , , , , | 51 Comments

MEET A REAL HERO BRIAN CARR

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Today I had a terrific afternoon. The Texas NF Foundation had its first picnic in Houston Herman Park. I’m so happy that my family and I had a great day in the park. I met a lot of new friends that have both NF1 AND NF2. I was blessed by each and everyone. Before today, I was not 100% sure if I would go to camp or not. Well I’m 100% sure now. I will be there. I think the new friends I met today was a big part of why I’m going. I found myself talking to other people about going. I think a lot of them learned of the camp today. All seem to want to attend. I would like to see a huge turn out. I will be taking lots of pictures. Be ready to smile.

By now we have seen my hero. Brian Carr. I met Brian and his Mom Virginia. Brian has NF2 and he agreed to have a picture with me. I so happy he did. Brian will visit my blog from time to time. Let’s show him how we do it here. SUPPORT ! I pray for the best for Brian and all of the other wonderful people I met today. Thank you Brian, and I hope to see you at camp. Think about it. You can find a few more photos from the picnic on my photo page. Cindy will have them as well. Thank you Cindy Susan, and the Texas NF Foundation for a terrific picnic.

August 5, 2007 Posted by | A MESSAGE FROM REGGIE, Blogroll, Friends, Fun, Just Ask!, neurofibromatosis, News, NF2, Texas NF Foundation | 77 Comments

THE T-SHIRTS ARE HERE!!! THE T-SHIRTS ARE HERE!!!

shirtsale1.jpgHere are two of my nieces, who you have seen before. They are helping me get the word out that our new shipment of JUST ASK t-shirts just arrived! FINALLY!!! I know many of you have been waiting patiently since we ran out last month and I really, really appreciate it.

To order, click here!

ALL sizes are now available to anyone that would like to order. S, M, L, XL, 2XL AND 3XL!!! They make terrific birthday, Christmas and wedding presents! And nothing says “I Love You!” more than a “Just Ask!” t-shirt on Valentine’s Day!!! Continue reading

July 12, 2007 Posted by | A MESSAGE FROM REGGIE, Awareness, Friends, Fun, Just Ask!, neurofibromatosis, T-shirt, Texas NF Foundation | 4 Comments

Texas NF Foundation presents $90,000 check to MD Anderson

thecheck6.jpgToday I was invited to join members from the Texas NF Foundation and doctors from MD ANDERSON HOSPITAL for a special presentation.

Minerva Terrill, a board member of the Texas NF Foundation, presented a check for $90,000 to the hospital for NF research. This is something all of us who are affected with NF can be very excited about.

Great researchers and clinicians are out there looking for a cure and there are great people like Minerva and Cindy Hahn who are doing what they can to raise the funds needed to fund that research. We have a lot to look forward to. Stay tuned! I know more good news is ahead.

June 21, 2007 Posted by | Awareness, CTF.ORG, Friend, Friends, Fundraising, http://www.ctf.org, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Photos, Research, Texas NF Foundation | 5 Comments

THANK YOU, NET 2

Last night I was invited to speak with Net 2 about my website, and neurofibromatosis. Wow! What a tremendous experience it was FOR ME. A great group that was very interested in neurofibromatosis and my campaign. I was able to share what it’s like to live with nf , and how I deal with it. I learned a lot from the group as well as I hope they learned more about nf. I feel blessed that the group received my message. Meeting Net 2 was just what I needed. Maybe if I hang around the group, I can learn more tips about making the perfect site for neurofibromatosis.

June 13, 2007 Posted by | About Me, Appearances, Awareness, Friends, Fun, neurofibromatosis, News, nf, Some People, Texas NF Foundation | 8 Comments

MY MESSAGE

Most of you may know a little about me. My Name is Reggie Bibbs. I have a disorder

called Neurofibromatosis, or NF for short. This disorder causes disfigurement, pain,

blindness, hearing loss, learning disabilities, and yes, even death.

Not only that but most of us who suffer with this disorder have everyday trials that may seem easy for you, but is very hard for us. For instance, how many of you give it a second thought about going out to buy supplies for your computer? You may worry about what you will wear? But that’s probably it. Continue reading

June 10, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Friend, Friends, neurofibromatosis, News, nf, NF1, Some People, Texas NF Foundation | 13 Comments

Texas NF Symposium Video – “OCULAR FEATURES OF NF I and II” – DR. RICHARD ALAN LEWIS

neurofibromatosis

“OCULAR FEATURES OF NF I & II”
DR. RICHARD ALAN LEWIS
Profesor, Departments of Opthalmology, Pediatrics, Medicine and Molecular & Human Genetics, Baylor College of Medicine

Dr. Lewis formerly worked with Dr. Vincent Riccardi during the early days of neurofibromatosis discovery, identification and research.

June 7, 2007 Posted by | neurofibromatosis, Texas NF Foundation, Video | 4 Comments

Texas NF Symposium Video – Dr. Sharon Plon “Genetic NF Testing Update”

drplon_7.jpgFor all of you who missed the NF SYMPOSIUM presented by the Texas NF Foundation, the first presentation is now available by clicking HERE.

Dr. Sharon Plon, Clinic Chief, NF Clinic, TX Children’s Hospital and Associate Professor of Pediatrics and Molecular and Human Genetics,
Baylor College of Medicine presented “
Update on Genetic Testing in NF1 and NF2.” We will be posting the other 4 presentations just as soon as we can convert them to the proper format for easy streaming.

Thank you Texas NF Foundation for allowing me to record video and take lots of photos to share on my website. Also, thank you Josh Powers of STANANDLOU Advertising for editing the videos and converting them for digital! It was a Saturday full of great fun, great friends and great information!!! Plus, I made a lot of new friends!!! If you have never gone to one before, I definitely recommend you attend the next one.

June 1, 2007 Posted by | neurofibromatosis, Texas NF Foundation, Video | 1 Comment

This is a PSA I did for the Texas NF Foundation

Neurofibromatosis poster with Reggie BibbsI can’t remember the year we shot this but I do remember that it won a national award in the Public Service category at the American Advertising Federation’s ADDY Award in Las Vegas. Gordon Jump, the Maytag repairman in commercials and Mr. Carlson fom WKRP in Cincinnati fame gave out the award that year. Lou had worked with him before and says he was the nicest guy in the world. He was a Mormon and died several years ago.

May 30, 2007 Posted by | neurofibromatosis, Texas NF Foundation | , , , , , , | 7 Comments

Minerva and Robert Terrill’s Story (Video)

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Raising awareness of the disease their daughter has been fighting since she was 4 years old has been a top priority for Minerva and Bob Terrill of Dallas. Denise Terrill, now 29, has neurofibromatosis, a disease that has caused tumors to grow along her central nervous system, severely damaging her brain stem.

Dr. Bob Terrill, Denise’s father and a dermatologist, diagnosed his daughter’s disease when she was a toddler. Since then, Denise has endured 18 major surgeries, the first of which occurred in 1990 and resulted in her hearing loss. Confined to her bed for almost 10 years, she has lost sight in one eye. She requires a ventilator to breathe and receives nourishment through a feeding tube. Continue reading

May 22, 2007 Posted by | Friend, neurofibromatosis, Texas NF Foundation | , , , , , | 5 Comments

Texas NF Foundation, NF Family Camp, September 7-9, 2007

camp_all.jpgNF FAMILY CAMP, CAMP FOR ALL
SEPT 7 – 9, 2007, Burton, TX

Texas NF Foundation is thrilled to bring you the 16th Annual NF Family Camp. The purpose of this camp is for families affected by NF to connect with one another in a place where our commonality is NF. It will be a time to learn and laugh as we make meaningful relationships with new friends and grow closer to our own families. Continue reading

May 20, 2007 Posted by | Favorite Places, Friends, Fun, neurofibromatosis, Texas NF Foundation | , , , , , , | 5 Comments

Watch the history of the Texas NF Foundation Video!!!

Texas NF Foundation 15th Anniversary VideoI have a terrific video for all of you!

About 10 years ago, I was asked to help participate in a video detailing the history of the Texas Neurofibromatosis Foundation. Our 15th Anniversary was coming up and Bob Hopkins, the Executive Director at the time, wanted to recognize the people who brought us to where we were while also helping educate the new trustees, volunteers and patients about the history of the foundation and all of the ground-breaking work we helped initiate.

I’ve just watched it for like the 100th time and I’m still learning more stuff!

Click here for the link to the Texas NF 15th Anniversary Video!

Continue reading

May 18, 2007 Posted by | Awareness, Friends, Fun, Fundraising, neurofibromatosis, Texas NF Foundation, Video | 4 Comments

We endorse the The Fight For Federal Funding For NF Research Petition to U.S. Congress. SIGN PETITION BELOW

To: U.S. Congress

Neuro-fibroma-tosis. Have you ever even heard of it? Probably not, even though it is the most common neurological disorder affecting 1 in 3000 people. Neurofibromatosis (NF) is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time.

NF affects all races, all ethnic groups and both sexes equally. And as of yet, there is no known cure for NF.Clinical drug trials are being conducted by ten major hospitals called the “NF Clinical Trials Consortium”. With these trials comes the hope of accelerating drug development.

SIGN PETITION Continue reading

May 11, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Fundraising, neurofibromatosis, NF1, Texas NF Foundation | 6 Comments

Philanthropy World Profiles Texas NF Foundation by Bob Hopkins

Bob HopkinsThe Texas Neurofibromatosis Foundation was founded in 1978 by an Austin mother whose son had NF, a genetic disorder that causes disfiguring tumors. While the disease is not uncommon, most people do not know of the disease, partially because people who have it tend to shield themselves to avoid public ridicule.

During the ten years after it was founded, the families involved with the foundation raised money any way they could – from walkathons, skateathons, garageKathy Price and NF board members sales, and all the other means “families” use to help their own.Relief for the group came when the Dallas and Houston NFL alumni adopted their cause. Annual golf tournaments were established to support a small office in Austin and raise limited funds to support budding research projects. Continue reading

May 10, 2007 Posted by | neurofibromatosis, Texas NF Foundation | 9 Comments